(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
– Document Title Example:  Mayo Clinic Connect MAI/MAC Information
– Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
– As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal "file cabinet" on MAC/MAI!  Go to it!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@jms64

I have been treated for Mac since 2010. Been on medication since with progressing side effects from the drugs. I was taken off the medication in June. Since that time the cough has returned along with some bloody sputum. Had another CT last week and return to the doctor tomorrow for more evaluation. Do any of you have chest pain or discomfort with this disease? I do not have this problem while on the medication. Now that I am off of it I am experiencing the tightness and pressure in the chest area. It also has gone into COPD. Use an inhaler. Weight loss and the medication has lowered my white count and plat.

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Hello Digmeme, good for you that you did NOT give up! Just keep educating yourself .. sharing your knowledge on this Forum and taking good care of yourself! We are all here for you on our shared journey! Hugs to you! Katherine

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I tuned into the Doctor channel on SiriusXM yesterday morning and again in the afternoon for the episodes on NTM. I was disappointed to only get bits and pieces of the morning show as apparently either the radio station or Sirius was having technical difficulties and it kept cutting out on me. The afternoon show was even worse. At first I thought it may be our internet server, but every other site worked. Anyway, I did get a few bits of good information.

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@mimi68

I tuned into the Doctor channel on SiriusXM yesterday morning and again in the afternoon for the episodes on NTM. I was disappointed to only get bits and pieces of the morning show as apparently either the radio station or Sirius was having technical difficulties and it kept cutting out on me. The afternoon show was even worse. At first I thought it may be our internet server, but every other site worked. Anyway, I did get a few bits of good information.

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Mimi68,
Same thing happened to me!
Could barely get through the distortion. Surely hope there is a print out available!
If anyone lives in the Atlanta, GA area, there is a new MAC Specialist at Emory/ St Joseph’s Hospital. Dr. Colin Swenson is willing to listen. He spent an hour with me. His staff is super kind too!
Jan/GA

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Hi Jan/GA,
I went into the Doctor channel this afternoon and was able to get the episode about NTM and it came in very clearly. Was able to listen to the whole thing.

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Hi mimi68 was there any new information for us?

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Hello All, I just received this email from the NTMir .. thought I’d share it in case anyone is interested! Katherine

It said:
You are being asked to participate in research to help develop a clinical trial on pneumonia

NTMir is forwarding the following information on behalf of Duke University:

We are doing research to find out what patients and caregivers think about a new way for enrolling patients into a clinical trial on pneumonia. We are focusing on pneumonia that people get in the hospital or when on a machine that helps people to breathe. The research involves one face-to-face or telephone interview and two follow-up online surveys.

Patients can take part if:
•They are 18 years of age or older
•They have: •Been in the intensive care unit (ICU) or in the hospital overnight at least once in the last two years and have had a previous diagnosis of pneumonia while in the hospital, a short-term illness, a longer-term illness, physical trauma, or surgery, or are immunocompromised, OR
•Chronic lung disease (for example: chronic obstructive pulmonary disease [COPD] and cystic fibrosis)
Patients and caregivers will each receive compensation for participating in the interview. In addition, for each completed online survey, patients and caregivers will also receive compensation. If patients and caregivers complete all of the data collection events, an additional compensation will be provided at the end of the study, to thank participants for their participation.

Although we hope you will join us, participation is voluntary. There are no direct benefits from participating. Anything you say during the interview will be kept confidential, and your name will not be included in any reports, articles, or presentations about this study.

Patients can take part even if their legally-authorized representative does not. Likewise, caregivers can take part even if their loved one does not.

If you would like more details about the study, or you would like to schedule an interview, please contact the study’s research assistant, Katelyn Blanchard, at 1-877-637-1490 or via email at katelyn.blanchard@dm.duke.edu.

— The Clinical Trials Transformation Initiative at Duke University

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@justjanet
Hi Janet,
Let’s communicate on the Forum .. this is REALLY good information to share with ALL! You did SUCH a good job! Do you mind if I put it on the Forum?

I found out about googling the bios of doctors the hard way because of my husband’s health. He has leukemia .. a blood cancer .. AND I found out the hard way that we had been referred to an Oncologist who was a Specialist in COLON CANCER!! I was SO angry!! Did not even discover it until we were spending winters in a warmer climate AND I then realized I needed to do MORE “Due Diligence” and started my googling doctor bios .. and I found an Oncologist who SPECIALIZED in leukemia! Who then put my husband on a newly FDA approved chemotherapy .. my husband is alive today due to that man as far as I am concerned!

“Due Diligence” does the job as you have well found out! Good for you! I am so happy for you that you found the very best Center for Bronchiectasis Care and they treat NTM .. PLUS it is covered by your insurance! Sorry .. I do NOT consider it “luck” for you! You absolutely deserve this! You have worked so hard with your Plan A .. Plan B .. Plan C. You’ve done such a good job with your research and planning!

Now I would suggest you gather up ALL the records you can find .. doctor office notes .. Xray .. MRI .. Ultra sounds etc. ANYTHING that you can think of .. get it organized. A lot of doctor offices and hospitals will put you off .. my solution is to get a date and tell them I WILL pick it up personally!! That way I can sign whatever legal document necessary PLUS it gives them a deadline and I know I will have them for the appointment. THEN .. do NOT give up your copies. Make these copies your PERSONAL copies for future reference as needed. Make sure any NEW doctor makes COPIES of YOUR copies! I know in my home state doctor offices are only legally required to keep medical records for seven years. So it is important with our diseases to have our own records to show the disease history and progression. Then write down a detailed list of questions for your new doctor. If you google it you will find many doctor question lists. Personally I cut and paste many of the various question lists and came up with my own.

After that? Just let go! Know that you need to “Put your energy into what you can control .. and let go of what you can’t control!” You have already put your energy into doing your “Due Diligence” .. now you just need to be serene about the outcome .. you can’t control the outcome. Just keep us posted here on the Forum .. know we are here for you! Sending you a hug! Katherine

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@katemn

@justjanet
Hi Janet,
Let’s communicate on the Forum .. this is REALLY good information to share with ALL! You did SUCH a good job! Do you mind if I put it on the Forum?

I found out about googling the bios of doctors the hard way because of my husband’s health. He has leukemia .. a blood cancer .. AND I found out the hard way that we had been referred to an Oncologist who was a Specialist in COLON CANCER!! I was SO angry!! Did not even discover it until we were spending winters in a warmer climate AND I then realized I needed to do MORE “Due Diligence” and started my googling doctor bios .. and I found an Oncologist who SPECIALIZED in leukemia! Who then put my husband on a newly FDA approved chemotherapy .. my husband is alive today due to that man as far as I am concerned!

“Due Diligence” does the job as you have well found out! Good for you! I am so happy for you that you found the very best Center for Bronchiectasis Care and they treat NTM .. PLUS it is covered by your insurance! Sorry .. I do NOT consider it “luck” for you! You absolutely deserve this! You have worked so hard with your Plan A .. Plan B .. Plan C. You’ve done such a good job with your research and planning!

Now I would suggest you gather up ALL the records you can find .. doctor office notes .. Xray .. MRI .. Ultra sounds etc. ANYTHING that you can think of .. get it organized. A lot of doctor offices and hospitals will put you off .. my solution is to get a date and tell them I WILL pick it up personally!! That way I can sign whatever legal document necessary PLUS it gives them a deadline and I know I will have them for the appointment. THEN .. do NOT give up your copies. Make these copies your PERSONAL copies for future reference as needed. Make sure any NEW doctor makes COPIES of YOUR copies! I know in my home state doctor offices are only legally required to keep medical records for seven years. So it is important with our diseases to have our own records to show the disease history and progression. Then write down a detailed list of questions for your new doctor. If you google it you will find many doctor question lists. Personally I cut and paste many of the various question lists and came up with my own.

After that? Just let go! Know that you need to “Put your energy into what you can control .. and let go of what you can’t control!” You have already put your energy into doing your “Due Diligence” .. now you just need to be serene about the outcome .. you can’t control the outcome. Just keep us posted here on the Forum .. know we are here for you! Sending you a hug! Katherine

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Sorry Katherine! Just hit reply and thought I was on the forum then or not paying enough attention. Not the brightest bulb on the planet. 🙂 Thanks for all the tips. I will definitely use them.
Have a great day-
Janet

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@heathert

Hi mimi68 was there any new information for us?

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Hi Heathert, Since I am new to this site and also this blog, I felt I got some valuable information to discuss with my pulmonologist. They talked about symptoms, treatment, sources from which the infection comes, which some of this is repeat of what I’ve already read. I was mostly interested in the testing procedures for this disease as my doctor is rather set on treating it before we are even certain that I have it. They also talked about ways to prevent getting the infection. I feel that if you have access to SiriusXM, Doctor channel 110, it will be worth your while to listen to it. The part about NTM is about an hour long.

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@katemn

@justjanet
Hi Janet,
Let’s communicate on the Forum .. this is REALLY good information to share with ALL! You did SUCH a good job! Do you mind if I put it on the Forum?

I found out about googling the bios of doctors the hard way because of my husband’s health. He has leukemia .. a blood cancer .. AND I found out the hard way that we had been referred to an Oncologist who was a Specialist in COLON CANCER!! I was SO angry!! Did not even discover it until we were spending winters in a warmer climate AND I then realized I needed to do MORE “Due Diligence” and started my googling doctor bios .. and I found an Oncologist who SPECIALIZED in leukemia! Who then put my husband on a newly FDA approved chemotherapy .. my husband is alive today due to that man as far as I am concerned!

“Due Diligence” does the job as you have well found out! Good for you! I am so happy for you that you found the very best Center for Bronchiectasis Care and they treat NTM .. PLUS it is covered by your insurance! Sorry .. I do NOT consider it “luck” for you! You absolutely deserve this! You have worked so hard with your Plan A .. Plan B .. Plan C. You’ve done such a good job with your research and planning!

Now I would suggest you gather up ALL the records you can find .. doctor office notes .. Xray .. MRI .. Ultra sounds etc. ANYTHING that you can think of .. get it organized. A lot of doctor offices and hospitals will put you off .. my solution is to get a date and tell them I WILL pick it up personally!! That way I can sign whatever legal document necessary PLUS it gives them a deadline and I know I will have them for the appointment. THEN .. do NOT give up your copies. Make these copies your PERSONAL copies for future reference as needed. Make sure any NEW doctor makes COPIES of YOUR copies! I know in my home state doctor offices are only legally required to keep medical records for seven years. So it is important with our diseases to have our own records to show the disease history and progression. Then write down a detailed list of questions for your new doctor. If you google it you will find many doctor question lists. Personally I cut and paste many of the various question lists and came up with my own.

After that? Just let go! Know that you need to “Put your energy into what you can control .. and let go of what you can’t control!” You have already put your energy into doing your “Due Diligence” .. now you just need to be serene about the outcome .. you can’t control the outcome. Just keep us posted here on the Forum .. know we are here for you! Sending you a hug! Katherine

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Janet, keep us posted! You are doing such a great job! Sending you a Hug! Katherine

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